OT: Adjusting to life with a special needs child

[ez]

I am looking for some inspiration and advice here. DH and I have been married for 22 years. I guess things went pretty smoothly for us over the years, our son born in 84 and DD born in 94 have both been healthy and excelled in school. We decided to have another child and D was born in July of 04. He was diagnosed with ASD this Jan. We have decided that I will take him to live with relatives in NY for a while because the services where we live absolutely stink. I have quit my job of 18 years and we are living on one income.
We were talking last night and admitted to each other that our big decisions in the past consisted of who would pick up dinner on their way home from work. Our lives as we have known them for many, many years seems to have been turned upside down. I know there are many people who have been dealing with issues far worse than ours, however for the first time in my entire marriage there have been moments recently when I have wondered if we can keep it all together. Would love to get some advice on how to cope, and maybe a few stories on how things WILL get better. Thank you!

 

[XYSRUS]

Yes, been there, done that. Having a special needs child is very difficult and very rewarding. After the initial shock and then anger, fades, you realize this child is yours and your responsibility. You must pull yourself together, don't dwell on how you have to change, and do what is best for him/her. It's stinks at times, too. One of my four boys is ASD too. Check out the OASIS web site for online support. And, visit WDW as much as possible. It is the happiest place on earth!

 

[Nik's Mom]

I've been there. Our oldest ds is autistic (he's 6 years old), and now our youngest (almost 4 years old) was diagnosed with SID. It is heart-breaking, at times. I was just looking at my oldest ds's baby pictures and I almost started to cry. We had no idea what the future would bring back then. It just made me a little sad. But then, I just pickk myself up and keep on moving. You can't let the depression hit too hard. Hang in there. If you haven't seen Parenthood with Steve Martin, I highly recomend it. The movie does a good job at showing the ups and downs of being a parent, and even touches on having a special needs child!

 

[tw1nsmom]

It's a hard transition. You really do go through all the stages of grief, and often switch back and forth. What you're feeling is normal. I wanted to share something with you that many on this board have read.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Please keep reaching out to other for help. Take time for yourself, no matter how small. This is even more important for parents of special needs kids. Take time to be a couple and do what you need to to foster a team mentality. Also know there are gifts your special needs child will give you that are different than the gifts that typically developing children give. You will rejoice in hard fought milestones that before now you took for granted.

Please feel free to PM me if you have any questions about the NY special ed. regulations. If I don't know the answer, I'll do my best to point you in the right direction.

 

[JenJen]

I just wanted to give you a (((((((((((((((((((((((((hug))))))))))))))))))))) I am sure you a over whelmed right now but things will get better just give it some time.
and here is some pixie dust for you!*~*~*~*~*~*~*~

 

[Nik's Mom]

It's a hard transition. You really do go through all the stages of grief, and often switch back and forth. What you're feeling is normal. I wanted to share something with you that many on this board have read.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Please keep reaching out to other for help. Take time for yourself, no matter how small. This is even more important for parents of special needs kids. Take time to be a couple and do what you need to to foster a team mentality. Also know there are gifts your special needs child will give you that are different than the gifts that typically developing children give. You will rejoice in hard fought milestones that before now you took for granted.

Please feel free to PM me if you have any questions about the NY special ed. regulations. If I don't know the answer, I'll do my best to point you in the right direction.

Thanks for sharing that!

 

[PatMcDuck]

My special needs son is 16 now, and I am sometimes still not used to it, still feel not ready to deal with the situation. He has Down syndrome and autism. Sorry to admit I had a second level of adjustment dealing with his double diagnosis. I networked with other Downs families, but felt like their kids were superstars compared to Sean (did not walk until age 5, still no conversational speech at age 16, etc). So, I sort of dropped out of that situation, and just do the best I can each day. I have 3 other teens, Sean is 3rd out of 4 kids, and lately there are days where SEAN is the one who keeps me sane-- the other 3 are making me crazy.

Good luck, there are good days and bad ones, but after awhile the good WAY out number the bad.

PS Sean LOVES all things Disney

 

[DisneyDreams4P&B]

Similar to Nik's Mom, our DS6 has autism and our DS3 was just diagnosed with SID. You go through a grieving period, for what your hopes and dreams were going to be. You get scared for your child then you fear the unknown and what lies ahead, but you also remember that you were given a special gift, that only you and you alone can take care of and nurture. There will be days that you will cry (for seemingly no reason and some days for more than your share of them). Just know that with a special needs (SN) child also comes something wonderful that mothers of "regular" kids rarely get. You get to see things that other parents rarely do, the small, simple things that they overlook, are now huge accomplishments to you and your family. What is one step to a "regular" child, is a gigantic leap to ours, and we value it more than gold because we know how much harder our children had to work to get there. You look at life through their eyes and see colors more vibrant, sounds more poetic and life more precious. I cannot begin to tell you how many times I see friends of mine who do not have a SN child and their child brings them a flower, they accept it and think "oh that is so cute" and then they are on to something else, but when my son thinks to pick me weeds, dandelions with no blooms, just stems - this was something monumental, outside of his relm and to me they are the most beautiful bunch of flowers, no others can compare and are pressed into my memory book and etched into my mind forever. Every smile, every laugh, every moment with your SN child you come to understand your purpose and the bigger picture.Stay strong and stay positive, these boards have been a lifesaver when I have been down myself.

 

[kdtwiss]

I just also wanted to add that because your ds was born recently, not 10 or 20 years ago - he has a much better chance at not only improving significantly, but perhaps even recovering completely. You need to pour every ounce of energy into researching all your options to help him - early diagnosis and treatment is THE key to fighting autism! THe treatments and therapies they have now are a dream compared to what it was like when my ds was diagnosed in 95. Sounds like you have a wonderful strong marriage and that will help you get through, I wish you all the best! Turn that grief into pure research energy and you will be amazed at what you can do!!

 

[Grace&Carolinesmom]

tw1nsmom--Thank you for sharing "Welcome to Holland." I actually starting crying as I read it. I am going to print this out...its just beautiful.

ez--I think all of us here understand your emotional rollercoaster on an intimate level that those without special needs children can never truly understand. I have (and still do) have those days where I feel that guilt, frustration, anger, and the ever so persistent "why me?".......And then I step back and ponder...yes indeed....why me. I choose to believe that everything happens for a reason. That God (I don't want to get into a philosophical debate about religion) has a plan and a reason for choosing me (us) to be blessed with this gift. This is part of my existence on this earth. It is not what I would have chosen or ever wanted but because I am now on this path, I must learn and experience what is truly my new destiny.

What I have learned thus far....The biggest lesson I have been taught is empathy and understanding for others with special needs in their life. I would have NEVER had such a special connection to others if I had never been given this blessing. Sometimes I hear comments and see expressions on peoples' faces when they are around people with special needs and I feel sorry for them. They do not have the knowledge to deal with the situation or the empathy to "put themselves in their shoes."

My sensory-seeking autistic DD (5) has taught me the simple joys of smells (a cup of coffee, scented hand lotion, a new vinyl floor), how much fun it is to recite the lyrics of a Laurie Berkner song over and over and see the pure joy in her face, that there is nothing wrong with doing a "happy dance " complete with vocalizations every time she is happy or excited about anything, that bugs are pretty interesting and fun when you look at them up close--like 2 inches from your nose close--and it is exciting to touch them, and I could go on and on.......

I think once we accept our destiny and trust that this is a gift rather than a burden, we can truly begin to open ourselves up to the true meaning of life and all of those self doubts and "what ifs" will just fade away into the background as wisdom replaces them.

So chin up and hold your head high. It WILL get better. And always try to keep a sense of humor when things are very hectic and frustrating....many times you can take a step back and start laughing, and laughing and laughing until you forget what made you so upset to begin with.

 

[nliedel]

We've all been through it. We adopted a boy with severe drug and alcohol issues. We were so cavelier when we did it but had no idea what we were in for. I would do it again but somedays are hard. I miss a lot of things we used to do without thinking but you know what? We would have missed them anyway because of kids in general

Listen to the other posters here. They have good advice. Just because you miss your old life sometimes does not mean you don't love your son. I used to think that sometimes, that there was something wrong with me for wanting it a little easier. There is not one thing wrong with a little pity party every now and then. I reccomend chocolate.

 

[DisneyDreams4P&B]

This was read at a conference I went to, thought I would share​

[font=Times New Roman,Times,Times NewRoman][size=+1]THE SPECIAL MOTHER





[/size][/font]

[font=Times New Roman,Times,Times NewRoman][size=-1]Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of special needs children. Did you ever wonder how mothers of special needs children are chosen?[/size][/font]

[font=Times New Roman,Times,Times NewRoman][size=-1]Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:

"Armstrong, Beth, son. Patron saint, Matthew."

"Forest, Marjorie, daughter. Patron saint, Cecilia."

"Rutledge, Carrie, twins. Patron saint…give her Gerald. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a disabled child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary.

When her child says "Momma" for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."



"I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air. God smiles. "A mirror will suffice."


[/size][/font]

​

 

[steffali]

It's a hard transition. You really do go through all the stages of grief, and often switch back and forth. What you're feeling is normal. I wanted to share something with you that many on this board have read.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Please keep reaching out to other for help. Take time for yourself, no matter how small. This is even more important for parents of special needs kids. Take time to be a couple and do what you need to to foster a team mentality. Also know there are gifts your special needs child will give you that are different than the gifts that typically developing children give. You will rejoice in hard fought milestones that before now you took for granted.

Please feel free to PM me if you have any questions about the NY special ed. regulations. If I don't know the answer, I'll do my best to point you in the right direction.

That was great!!!! What part of Upstate NY are you from ????????? I need some inforamtion about services for my Disabled Daughter
Thanks!

 

[tw1nsmom]

That was great!!!! What part of Upstate NY are you from ????????? I need some inforamtion about services for my Disabled Daughter
Thanks!

I like that story too. I can't remember when I first heard it.

I live in the Capital Region on NY. I'm not a professional or total expert, but I took a fairly extensive course to become a Parent Lay Advocate. I also do a lot of research on my own. As I said, I don't know all the answers, but I can probably point you in the right direction to find them.

 

[steffali]

I was a very young single mother to my disabled daughter, everyone tried to tell me to give her up for adoption so I would " Be able to enjoy life" I am so happy I didn't listen to them . She is now 19 years old and let me tell you that she brings me so much joy and laughter that I could never imagine a life with out her !!!! I could not have been able to deal with a lot of this without the love and support from my family. I have a great husband as well that picks me up when I need it and my motto that we try to live by is that there is always someone out there that has worse problems. SO I thank GOD for what my daughter can do and not for what she can't do. the Dr's all told me she would probably never walk talk or live past the age of 3. She is now 19 walks with braces and needs wheelchair for distance and she talks up a storm ...
She is in special ed classes and is physically and mentally delayed but she is mine and I absolutly love her and enjoy every minute we have together !!!!!!! My advice is keep the love and support of family and friends and know that everything happens for reason so count your blessings. Good Luck and lots of HUGS.......

 

[steffali]

I like that story too. I can't remember when I first heard it.

I live in the Capital Region on NY. I'm not a professional or total expert, but I took a fairly extensive course to become a Parent Lay Advocate. I also do a lot of research on my own. As I said, I don't know all the answers, but I can probably point you in the right direction to find them.

I am looking to relocate to Erie County so I was trying to see if I could get any advice on some Day Hab. Programs up there.

 

[tw1nsmom]

I don't know too much about specific adult services (I'm going on the assumption, possibly mistaken, that your DD has aged out of the school system) in Western NY, but here are some websites where you can begin your research.

Parent to Parent Western NY
My local Parent to Parent has been an excelent resource for me.

Erie County Department of Mental Health

If I can think of anything else, I'll post again. I know more about New York State school age special education. I'm not too familiar with adult services.

Oh, if she's still considered a high school student, here's a website with approved private programs through VESID.
http://vesid32.nysed.gov/specialed/privateschools/853reg.htm#we

 

[steffali]

I don't know too much about specific adult services (I'm going on the assumption, possibly mistaken, that your DD has aged out of the school system) in Western NY, but here are some websites where you can begin your research.

Parent to Parent Western NY
My local Parent to Parent has been an excelent resource for me.

Erie County Department of Mental Health

If I can think of anything else, I'll post again. I know more about New York State school age special education. I'm not too familiar with adult services.

Oh, if she's still considered a high school student, here's a website with approved private programs through VESID.
http://vesid32.nysed.gov/specialed/privateschools/853reg.htm#we

Thanks for the info. she will be Graduating next year
So I am starting to look into day programs now. Thanks again!!!!

 

[SueOKW]

That Holland story is what got me through my son's diagnosis.

I also learned that all a marriage has to do to survive a crisis like this is to get beyond the first 3 years. My DH and I committed to each other that it wouldn't be fair or right to either one of us OR our DS if we were to split up - but that was darned rough.

At the end of the day, I feel that because of DS I get more out of life, waste less time playing games, and know what's important and what isn't.

thanks Kevin, for making it through a very very difficult birth.

 

[michelle9343]

I agree with all of the PP. My DD keeps me on an emotional roller caoster ride. Having a multitude of illnesses my heart breaks for her. But she always amazes me. She lives it her happy world and I thank God that she shares it with me. She started out for the first 2 years wanting nothing or no one except me. Over the past 8 years she had grown into a very social little lady. She brings sunshine to so many total strangers. When she makes me CRAZY all she has to do is giggle and my anger melts away. Without saying a work she is able to make sure we all know how much she loves us. I would never say it will be easy and it would be a lie to say that I don't pray that someday she would wake up and say "mommy I love you" But SN childern fill our lives with endless blessings.